While I wasn’t diagnosed until I was 10 years old, I’d had severe aches and pains in my legs since I can remember. Though we always put it down to ‘growing pains’. It simply never occurred to me to ask why I was the only boy who was in immense pain after a kick around or when we played soldiers in the school playground. It wasn’t until my right knee swelled up badly one day that I and my family started to worry. Unfortunately it took nearly a full year going from hospital to hospital until I was diagnosed with juvenile rheumatoid arthritis at the Birmingham Childrens Hospital. I have found it difficult to live with it ever since.
What advice would you give to someone who has just been diagnosed with RA?
Seek out fellow sufferers! The internet is wonderful for seeking out help and advice from people in the same situation as you, with the exact same feelings and physical challenges. Learn to understand the mental challenges that come along with any form of chronic condition, especially when chronic pain is involved. Find a good rheumatologist! Do your research, thanks to great sites such as RA Guy’s site, trustworthy information is just a click or two away.
Do you use any mobility aids?
I use a walking stick(s) quite often due to both pain and an inability to walk when the condition is at it’s worse. I sometimes use knee pads to both protect my knees and calm things down, they actually work surprisingly well. Had a stair railing fitted to help me with getting up and down stairs.
How has living with RA helped to improve your life?
Hmm, that’s a difficult one. I’d say I’m more understanding of the limitations and challenges disabled people suffer from and care a great deal about them. I appreciate a comfortable seat more then most, same can be said for baths.
Do you have any visible signs of RA?
Thankfully I currently have little serious disfigurement and the only signs of surgery are two small holes in my knees where cameras were used to inspect inside the joint.
Can you please describe some of your favorite coping strategies for living with RA?
I struggle to live with this condition daily, so I’m certainly no expert on coping with it to well. But I’d recommend writing down your feelings daily to help you mentally get a grip of matters and will help you understand your pain and the best ways to cope with it. Become part of a social environment where you can discuss RA, this can be locally or of course on the web, there are many great sites out there but it’s good to interact with people who simply understand. A weird one, but I’m a fan of self-hypnosis and it might be worth checking out.
Can you please describe your current medical (traditional and alternative) treatments?
Currently take Celebrex Celecoxib. Been doing the usual physical exercises to help the joints and muscles. Take painkillers to help with the immense pain, not sure where I’d be without them.
Is there anything else about yourself that you would like to share?
Yes, I’ve struggled with handling RA both physically and mentally. I’ve had spells of depression and even other related symptoms such as panic attacks and anger attacks. I think it’s important that those newly diagnosed are told about the mental challenges that RA can bring let alone the physical troubles. RA is as confusing to those who suffer from it as those who do not, so helping people understand this condition should always be of importance to anyone who is in such a situation. Don’t be afraid to ask for help, especially when it comes to doctors and specialist who will more then happily ignore you if you don’t speak up for yourself. Oh and stay strong!